[Patient and public involvement in clinical research: An introduction]. / Aktive Beteiligung von Patient*innen an klinischer Forschung ­ Eine Einführung.

ABSTRACT

Usually, patients participating in clinical trials have a passive role as test persons. This creates a risk that patients' needs and interests are not reflected in clinical research. The aim of the present paper is to give an introduction to patient involvement in clinical research. It is based on an exploratory literature research and our own experiences with patient involvement. By actively involving patients in the design, conduct and translation of clinical trials, research and healthcare can be better tailored to meet the patients' needs. Patient involvement has the potential to enhance the quality and relevance of research, support patient empowerment and contribute to the democratisation of research processes. There are different methods to involve patients in research, which are often differentiated as consultation, cooperation and user-led research. Methods, time of involvement and persons to be involved should be chosen to fit the aims of the involvement. While cultural, practical and personal barriers could hinder patient involvement, there are several strategies that enable effective involvement defining the aims of the involvement, clarifying motivation and expectations as well as roles and the form of cooperation, offering training, planning sufficient resources, involving patients from the start and communicating the benefits of involvement.